White House Chronicle

News Analysis With a Sense of Humor

Obamacare’s Silent Constituency

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In the end, as so often, it all came down to one person. In this case Chief Justice John Roberts.  He sided with the liberals enough to save the basic provisions of the Affordable Care Act.

In the tumult the wailing and the sighing, the gentlest of gentle sighs, inaudible to all but those who know, comes from the permanently sick, just-alive people who suffer from the immune system disease known as Chronic Fatigue Syndrome, called Myalgic Encephalomyelitis in much of the world. This is a disease little understood and under-researched, which it is believed afflicts 1 million Americans.

It is a disease that has no mercy. It is almost without exception a life sentence, robbing the victim of normalcy. Its symptoms include total collapse after exertion, especially after exercise; sleep that does not refresh; periods of months or years of being bedridden with pain from bones “that feel as though they are exploding,” according one victim, Lynda Haight; and a mental fog that makes the simplest task, like paying bills, too difficult many days. Other symptoms include extreme sensitivity to light, noise and normal city and suburban noise.

To this community of the lost, this cohort of hopelessness, Obamacare is a blessing; a small blessing but one that may grow in time when a cure is found, or at least when a therapy which relieves the suffering is developed.

These are the very people — sick, voiceless and hidden in in plain view – who have been shunned by insurance companies.

Those patients who contracted the disease in childhood have never been able to get insurance. They are the quintessential preexisting condition demographic. No room at Hippocrates Inn for them, even if they can afford it. Others have been dropped when they reach lifetime limits embedded in many policies.

Sadly, most of the expenses of those living this zombie life spend money not on being cured but being tested and using off-label drugs (drugs that are used for a purpose other than that for which they have been certified) in an endless search for partial, temporary relief.

Marly Silverman, a patient activist and director of PANDORA, a coalition of Chronic Fatigue Syndrome groups, said that had the Supreme Court decided otherwise, patients with chronic disease would have been forced back to uninsurable limbo.

For now, the apparent saving of Obamacare is a mercy for all the lifetime diseases. But it has a particular meaning for CFS sufferers because there is no easy diagnosis of the disease, and the patients often look quite well. It is a cruel irony that many CFS patients do not show signs ofbeing sick, so they are accused of sloth and malingering when they are as sick as can be.

Which is where the power of one comes in.

Women tell stories about devoted husbands — maybe the most famous being author Laura Hillenbrand’s. Also there are loyal wives who take up the burden, as in the case of Courtney Miller of Nevada, who is crusading for recognition for the disease that afflicts her husband Robert.

In other cases, lovers and spouses have taken the exits, leaving the prostrate to the additional suffering of loneliness and often poverty. Some sufferers are among the homeless. There many cases of victims living in cars and getting scant recognition or help from either the SocialSecurity Administration or doctors who take Medicaid patients.

John Roberts has become an important person in some very sad lives. For now he is the “one.”— For the Hearst-New York Times Syndicate

A World of Religion Separated by a Love of God

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When men and women of God gather, one might expect them to speak to each other. A Buddhist monk might break bread with an English vicar and discuss the problems of pastoral administration; or perhaps an imam might share with a Shinto priest the frustrations of the religious life. Some problems you would assume all religions have in common: tolerance by governments, the mundane matters of maintaining houses of worship, training clerics andobserving religious holidays.

Not so. I can report from the world’s leading assembly of traditional religions, which took place in Astana, Kazakhstan, at the end of last month, ecumenical discussion can be strained.

The great men, and a few women, who provide for the spiritual well-being of about 5 billion of the world’s people did not overtly seek out each other to discuss scripture, monotheism as opposed polytheism,  the nature of heaven or hell, reincarnation or the heavenly order. In the lunches and dinners of this conclave, the turbans mostly did not mix with cassocks, yarmulkes with the headscarves. In the social events, each religious group sought out its own.

The enterprising government of President Nursultan Nazarbayev of Kazakhstan hosts a tri-annual conference of the world’s traditional religions – no sects, cults, or relatively new religions are invited. Fundamentalists, whether Christian, Hindu or Muslim, also were notspecifically invited.

But some of the views expressed were pretty fundamental across the board. The line between orthodoxy and fundamentalism can be hazy. You could argue that orthodoxy is the dimension that kept the leaders of so much religion to their separate groupings during the conference's social occasions.

Dialogue — the purpose of the conference as explained by the government – was reserved for the formal sessions, held in two palatial conference centers in Astana, the capital of Kazakhstan.

The declared purpose of the assembly is to seek harmony and  understanding through dialogue. That dialogue grew heated – particularly between Muslims and Christians in the West – at a newly added session on the role of women in religion and society. One Saudi Arabian participant commented at that session that Islam puts women on pedestals, while the West puts them onbillboards half-naked.

Much of the back-and-forth in the argument over women was conducted by men, causing the Anglican Bishop of Bradford Nick Baines to suggest it might be a good idea to let women speak for themselves.

At the session on women, Kristiane Backer, a convert to Islam and former MTV host, who lives in the London neighborhood of Chelsea, defended the treatment of women in Islam and protested the bigotry of the English.

In the end, many delegates agreed that culture as well as religion affected attitudes to women. Daisy Khan, a Muslim from New York, was a uniting influence. She was able to find common ground on social needs in both developed and developing nations among all religions.

Kazakhstan itself is a particularly well suited to such a conference. After the years of enforced atheism during the 70 years of Soviet domination, it is vibrantly secular, with Muslims enjoying a majority. Kazakhstan's Chief Rabbi Yeshayah Elazar Cohen, who emigrated from Jerusalem, told me: “Every day I thank God that I’m living in Kazakhstan.” For emphasis he repeated this several times. I spoke with the Roman Catholic Archbishop of Astana, Tomash Bernard Peta, a Pole, who was also enthusiastic about religious tolerance in Kazakhstan.

So many people in such flamboyant religious dress, from Buddhist monks in saffron robes to Catholic archbishops in crimson skull caps to shiny black-helmeted Zoroastrians, gave the proceedings a surreal tinge – dress emphasizing difference rather than unity.

They at least got the measure of one another – many religions with many views of God and of man. I rather wanted to hear more about their visions of the deity or deities and less about the social divisions embraced by religions.

Incidentally, Astana boasts some of the most beautiful and stylish women to be found on the streets of any capital city. The ultra-orthodox of several religions may have had to avert their eyes during their comings and goings. — For the Hearst-NewYork Times Syndicate

Requiem for the Book

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Annie Proulx's 1993 Pulitzer Prize-winning novel “The Shipping News” would never have been written if she had not chanced upon another book at a yard sale.

In her introduction to the novel, Proulx says, “Without the inspiration of Clifford W. Ashley's wonderful 1944 work, 'The Ashley Book of Knots,' which I had the good fortune to find at a yard sale for a quarter, this book would just have remained a thread of an idea.”

In the novel, Proulx uses the earlier work as a benchmark: The knots and nautical language are used for chapter titles, characters' names and as a backdrop of sorts.

No matter. The thing, the glorious thing, is that it was by chance that the author found the earlier book.

Call it serendipity: It is the marvelous thing about books. You can pick them up just about anywhere, and a single volume can change your life or lead you into unexpected realms of delight. If a book purchase at a rummage sale pleases, chances are you will read the author's entire cannon.

The eclectic adventure of reading is part of the joy, perhaps a large part.

My adventure began in a used book store with a single play by Oscar Wilde, “Lady Windermere's Fan.” I was schoolboy who hated school but could be transported by visions of London salons, people talking in epigrams, witty men and gorgeous women.

From then on the used book store was the place of revolt, enchantment, fulfillment and escape. Swiftly I read most of Wilde, a lot of George Bernard Shaw; by chance, Fyodor Dostoyevsky's “Crime and Punishment” and on through the melancholy of other Russian authors.

Wilde and Dostoyevsky with equal relish?

Yes. The trick, I believe, was that unlike the reading list at school, this was private, eclectic, and I did not know where these writers fit in the arc of literature. For me, the works had not been contaminated by didactic teachers and idiotic reviewers.

I only tell you this because the physical book seems to be endangered.

The disruptive technology of the electronic book gains adherents daily, as fewer books are printed and book stores close. The printed book is on its way to becoming an antique, a relic of a bygone era.

When the book finally succumbs to life only among the electrons, gone will be not only the book but also the printer, the binder, the shipper and the bookseller. Gone will be the chance that you will discover a classic by Anthony Trollope or Ernest Hemingway, or just a good potboiler across a crowded bookstore.

I find if you buy books online (I got a Kindle for Christmas, which I lost), you find yourself confined to what you know. Also Amazon will advise of other books that they – their computers, that is — think you will like; but they do it by extrapolation. If you have fancied detective novels set in Italy (say by authors Donna Leon and Michael Dibden) they will send you similar reading recommendations, even though you have a yen for something quite different, although you know not what.

Computers are not as smart or savvy as their advocates think. Also I do not want a computer, no matter how discreet its owners say it is, knowing what I am reading. Based on recent forays, the machine will put me down as a socialist or a pervert, or both.

I know the physical book is doomed like the typewriter, the rotary telephone, the telex and the soda fountain; but I want this to be “The Long Goodbye,” which is the title of a Raymond Chandler book I purchased by chance somewhere.

The thrill of opening a new book is not replicated by switching one on. – For the Hearst-New York Times Syndicate

Please Stop Conflating Math and Science

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Here is a plea: Save the children. Save them from being harassed by the best intentioned and most visible public figures.

Please stop haranguing them about “math and science.” Math and science are not the same thing; related, yes, identical, no.

Math intimidates a lot of children. It intimidates those who do not have an early aptitude for figures. Consequently, many young minds are lost to the glorious world of science because they fear that they must pass through the Valley of the Shadow of Math.

Now if one believes that little Joanne ought to be a high-energy physicist, chasing atomic particles about with an atom smasher, she ought to be encouraged in the study of mathematics. But if little Joanne wants to devote her life to zoology, she should not be scared off by math before she has seen a primate.

Yet that is what we do through the endless exhortation by those who believe that it is only through applied science and  mathematics that the United States will continue to retain its leadership and prosperity in this century. Wringing our hands over U.S. students' lagging scores in math and science – always spoken of as though they were the same thing – is now a feature of our national life.

Not a word is heard about how we dominate the world in film, recorded music, franchising, creative uses of information technology (Google, Twitter, Facebook, LinkedIn), oil and gas drilling technology and medical device technology.

Our creative footprint across this world is enormous, and it is not yet being usurped except in areas where inexpensive labor and government indifference to human and environmental costs prevails.

Creativity and curiosity drive science. Math is a discipline of curiosity not of creativity; it is the tool, not the driver. It will tell the inventor, scientist and entrepreneur how to get there, but not where to go. The prescription for the future, coming from many politicians and leaders,including former admirals and generals, is more math and science education linked to a passion for entrepreneurism.

While the passion for a poorly defined concept of the entrepreneur among public intellectuals is white-hot, many of these people do not pass the entrepreneurism test. For example, Arthur Brooks, president of the American Enterprise Institute, and Gen. James Jones, former nationalsecurity adviser.

Lately both men have been at the podiums, preaching about a world of small business and individual risk. But they have not run small companies, bet their homes on startups, nor have run up credit cards to meet payroll. Accomplished men in their own right,  they have neither of them walked the entrepreneurial walk,  nor have they followed the math and science catechism.

The fact is most engineers need math in some degree, some scientists need a lot of math, but others need surprising little.

Also most people can boost their performance in a subject, if it is important to them to do something they really want to do.  People who need math can usually acquire the math ability they need to function where they want to be. That will not make them brilliant mathematicians. They will not opine on string theory or challenge obscure concepts of the nature of matter. But that need not, in the age of computers, keep them from, say, working as ocean geologists.

I was arguably the very worst math student who ever tried addition. But I got better when I started running my own business, and better still when I wanted to fly light airplanes. Truth is I was scared off by teachers with the math and science mantra.

For years, literature teachers have been scaring off students by suggesting that Shakespeare, Tolstoy or James Joyce are difficult to read and good for them. Now these math-and-science preachers are scaring off students from the adventure of science.

For the good of the future, let us stop frightening the children. Math to the left. Science to the right. Converge as needed. — For the Hearst-New York Times Syndicate

Energy in the Time of Elections: Claims and Counterclaims

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Where there's oil and gas, there's milk and honey.

That is the thrust of the American Petroleum Institute's  report to the platform committees of the Republican and  Democratic parties. It was previewed in Washington on May 15 by API President and CEO Jack Gerard, the oil  industry's man on Earth, known for his tough attitudes to just about everything, but the Obama administration in particular.

In unveiling the report at the National Press Club,  Gerard declared that the recommendations were without political slant and were delivered to both parties’ platform committees without favor; although it is  generally known that the oil and gas industry — and Big Oil in particular — cares not a jot for the Democrats. In a slip, while reading a prepared statement, Gerard referred to the “Democrat Party,” which is a term used by conservative commentators and members of the Republican Party who cannot stand the thought of  Democrats having a monopoly on the word democratic.

As expected, and in line with other recent utterances, Gerard called for accelerated leasing on federal lands, demanded more sensitive regulation, and declared his belief that the United States is potentially the greatest energy producer on Earth.

The White House shot back at API almost immediately, claiming it is the oil the industry that is lagging not the government.

Not to be outshot, Gerard said, “Once again, the  administration is trotting out claims about idle leases to divert attention from the fact it has been restricting oil and natural gas development, leasing less often, shortening lease terms, and going slow on permit approvals—actions which have undermined public support for the administration on energy. It is also increasing or threatening to increase industry’s development costs through higher taxes, higher royalty rates, and higher minimum lease bids.”

Even if the administration is right this time, it has a hard sell ahead.

In the case of natural gas, there has been a giant windfall from shale seams; but that has been coming for some time, and the administration can take no particular credit. Similarly, oil imports are down from 57 percent to 45 percent, reflecting increased domestic production, something that helps more with the balance of  payments than the price at the pump.

Gerard admitted that while natural gas prices are at historic lows because of new recovery and drilling technology, oil is priced internationally and that is no help to American consumers. API and its chief tend to conflate oil and gas to make a point. Likewise, they like to include Canada in “North American” energy.

But the energy claims of the administration are even harder to follow and more dubious. It likes to confuse fossil fuels – coal, gas and oil — with electricity and, in particular, with alternative energy, like wind, solar and, in a manner of speaking, nuclear.

Most energy gurus see the dawning of a switch from oil to electricity for personal transportation, for buses and some trucks. But that dawn is breaking slowly with consumer indifference, battery life questions and other problems, including the availability of rare earths for motors and wind turbines.

Experience suggests that energy is a lousy political issue. It is complicated; each side has its own facts and there is some truth to both sides’ facts.

At the end of the day, the energy debate is reduced not to the amount of drilling taking place on federal lands, or to the virtues of natural gas over nuclear, but to the price of gasoline at election time. If that is lower than it is today, President Obama garners votes. If it is up, no matter why, all the GOP and Mitt Romney have to say is that it is Obama's fault.

The money vote is known already: With a very few exceptions the energy money is on the GOP. But that is not new. What is new is that environment is not on the agenda. Better wait until 2016.

Florence Nightingale Still Comforting the Sick

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It is time to add May 12th to our list of dates worth commemorating — especially for 1 million in the United States who suffer from Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis.

This year marks 192 years since Florence Nightingale’s birth in Florence, Italy to wealthy English parents. As a young woman, she felt herself called to take up nursing. Later, her heroic work caring for wounded British soldiers during dark nights of the Crimean War earned her worldwide fame as "The Lady of the Lamp.”

Nightingale is given credit for inventing secular and modern nursing because she recognized that troops were dying, not just from their untreated wounds, but also from malnutrition and dehydration.

She followed up her war work by writing a landmark text for nurses and founding a training school in London. Her natural talent for numbers helped her keep detailed data on patients, and she ultimately won extra renown as a statistician.

But from 1857 Nightingale found herself often disabled by poor health, which some suggest may well have been Chronic Fatigue Syndrome(CFS). As a result, Nightingale now has been adopted as a kind of patron saint by for this under-studied disease. CFS sufferers here and abroad (17 million) commemorate her birthday as a kind of rallying point; their own lamp in the dark.

And the world of CFS is dark indeed — an abysmal place of unmediated pain, disability, hopelessness, financial ruin and sometimes suicide. One doctor told me that if she were to have to choose for herself between CFS and cancer, she would choose cancer. “At least for cancer, there are treatments; if they fail, you die. With CFS you are the living dead,” she said.

Everything about CFS is controversial. It has been on the medical agenda since 1934, when there was an outbreak centered on a Los Angeles hospital. Currently 63 outbreaks have been documented, but still what is not known dwarfs what is known.

What is known is that it is a disease of the immune system, related to and in some cases overlapping fibromyalgia, a disease of the muscles. It also involves the neurologic and endocrine systems. The disease has broken out in startling clusters – locations in Nevada, Florida, New York and California among others just in the 1980s.

Its deadliness is slow and subtle. Studies suggest that it takes 20-25 years off the average sufferer’s life, but there are no dramatic sudden deaths or gory symptoms to attract attention.

Expert virologists such as Columbia University’s Dr. Ian Lipkin agree that the disease may yet turn out to be viral. But the once-exciting report from the Whittemore Peterson Institute in Reno, Nev., targeting the XMRV retrovirus had to be retracted for faulty science.

Doctors are slow to diagnose CFS because if that is not the area of their practice, there is no easy diagnosis.

At present there are no bodily fluid tests, no imaging, no temperature transients. Nothing. Just very sick people; very, very sick people. Immune system studies, spinal fluid aberrations, and other biomarkers show promise and may be used to identify the disease some day.

Probably 75 percent of CFS victims start with some flu-like disease. Maybe 4 percent of people who come down with mononucleosis will get CFS.

Most sufferers' lives are turned upside down. Their first collapse comes without warning, usually following exercise.

Although memory and verbal-skills loss are often part of CFS, most victims remember exactly the day and time they were stricken. Laura Hillenbrand, who incredibly has written two best sellers, cannot leave her home and could not attend her own wedding.

Deborah Waroff, a New York writer has had CFS for 23 years. In September 2003 and all through 2004, she could do little more than lie on the living room couch. Waroff struggled back to the point of functioning a few hours a day. But two back surgeries in 2010 left her immune system at a record low level, and brought on another long-term collapse. She is back to two or three-hour spells of activity, but not on two consecutive days. “I've lost half of my adult life,” she says.

These stories are multiplied a million times. Being a victim can include abandonment by families, spouses and lovers, friends and colleagues, workplaces and insurance companies.

Florence Nightingale shone a light of hope from her lamp in the ghastly Crimean hospital wards. CFS sufferers hope that the spirit of Nightingale will shine a loving light into the darkness of their disease — lost as they are in plain sight of the world around them. – For the Hearst-New York Times Syndicate

Murdoch Has ‘Unfit’ Company

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Rupert Murdoch, the 81-year-old chief executive of News Corp., has been told by a select committee of the British parliament that he is “unfit” to head his global media conglomerate.

It is a particularly British accusation and one that is especially punishing, both because it is so indelible and is so seldom used.

“Unfit” is not a charge that is often leveled, so its impact is especially great. In 1971 a publishing rival of Murdoch’s, Robert Maxwell, was indicted as being “unfit” to run a public company. His were sins of greed and venality.

Murdoch’s sins, you might say, are sins of encouraging a culture of corruption in two of his London-based tabloid newspapers: the defunct News of the World and The Sun. It should be said that Murdoch did not invent the culture of Britain’s tabloid press, but he encouraged it to lengths of excess that had not been dreamed of earlier.

Fleet Street — the collective name for British newspapers which derives from the street where they were once all located — has always been a place of excess. But things really turned white hot in the late 1950s and 1960s.

Television and radio were competing for entertainment value, but news was still the province of newspapers. The game was to shock the readers without depressing them. The publisher Lord Beaverbrook said during World War II of his Daily Express: “I want the readers to feel the sun is shining when they read the Express.”

When I arrived in Fleet Street, well after the war, the sun was still shining in the popular papers. And what better way to keep the sun shining than by exposing the foibles of the aristocracy, the Royal Family and, of course, film stars?

We, the denizens of Fleet Street, were modestly paid but were given essentially unlimited expense accounts to disport ourselves around the clubs and restaurants of London in search of the rich and famous at unguarded play. The culture was one of discover, speculate, elaborate and publish.

Reporters were pushed very hard to dig up the titillating, embellish it and present it as news. We descended on crime scenes, the sexually engaged and the overtly greedy.

Yet there were limits, unwritten but understood, especially pertaining to private grief and even the Royal Family. Infidelity from a vicar was reportable. Similarly rumored goings on by major politicians and national figures, less so.

But change was on its way in the shape of Rupert Murdoch, and in the growing force of television in British life. Murdoch trashed the barriers, such as they were. He started publishing pictures of bare-breasted girls in The Sun, and turned his tabloids from being newspapers that published gossip along with the news to gossip-only papers. They became vicious as well as tawdry.

Murdoch also turned his papers from leaning politically left-wing to being savagely right-wing. It worked.

The Sun and the News of the World started making enough money to finance Murdoch’s other ventures, including buying and building Fox News.

Murdoch established an even more irresponsible culture. There were no rules now: Hence the phone-tapping, police bribing and other sins that have brought Murdoch to his sorry state of being “unfit.” There was a new thuggery and vulgarity that had not existed.

Yet if Murdoch is unfit, so are his accusers. It is British politicians — including Margaret Thatcher, Tony Blair and David Cameron and their followers — who indulged Murdoch, courted him and encouraged the arrogance of Fleet Street.

British newspaper publishers have always considered it their right to have access to the prime minister and no holder of that office has sought to disillusion them. – For the Hearst-New York Times Syndicate

The Case for Fixing Up America

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I’m asked with some frequency these days, what do I think the United States will look like in 25 years to 50 years? Underlying this question is a real concern that we’ve lost our way as a nation, that the best is behind us and a strong feeling that the generations to come won’t have it as good as we’ve had.

Actually, I think the United States will be fine. It’ll still be a world power, but not as dominant as it is today and was in the 20th century. I think we’ll still have one of the largest and most important economies in the world; that we’ll still be a powerhouse of invention; and that ourmovies, music and other entertainment forms will still dominate the globe.

American English will continue to be the international means of communication. Sorry Britain, there’s no license fee on language.

A rosy picture, eh? Not quite.

The second, and maybe the more important question, is what sort of country will the United States be to live in? This picture is less rosy.

First, we’re dividing into a country of the super rich and the burgeoning working poor living unpleasantly. The movement of quality manufacturing jobs in the auto and steel industries to the South tells part of that story. The high-wage jobs of Michigan and the unionized North — jobs that pay about $35 an hour — to the union-free auto plants and factories of the South, which pay $14 an hour, is a harbinger of the future. Can less be more?

If the United States is going to have told hold down its wages, then we should fix the living space; that means the infrastructure. It’s a mess and it’ll take decades to bring it up to the standards of much of the rest of the world.

We need better roads (less time in traffic), repaired bridges, sewers, water systems and public transportation. We also should fix the parks — state and national — and build pedestrian areas where we can enjoy the great natural beauty of our rivers and woodlands. London and Paris and Vienna make their rivers places of beauty and recreation. New York runs highways along its rivers — highways where it should have cafes. Los Angeles has enclosed its streams in concrete.

London has refurbished Brunel's masterpiece of design St. Pancras railway station to accommodate the new 200-mph trains that will whisk you to Paris in a little over two hours. Both the station and the trains are great achievements; achievements that can be enjoyed by traveler and visitor alike.

By contrast Union Station in Washington, D.C., a masterpiece in its day, is a mess. The tracks are inadequate. The station seating is inadequate, broken and mostly an afterthought. The restrooms are inadequate and dirty. The majesty of the station has been destroyed by tawdry retailers and half-finished repairs. Decay permeates the place — maybe to prepare the passengers for the disreputable taxis outside.

What an introduction to the capital of the free world. However, if you’ve just arrived on Amtrak, you might already be so dispirited you won't notice.

Likewise, the nation's schools need to be renovated. Leaky buildings seem more designed to prepare students for a lifetime of failure and decline than for a life of pride and accomplishment. “We make buildings and they make us,” Winston Churchill said.

The case for fixing the nation's infrastructure is compelling. But it does not compel in Congress. Congress is hell-bent to hurt the infrastructure with cost cutting-measures that will — as has happened in Britain and Spain — as likely as not add to the deficit rather than reducing it.

A more believable use of the government's resources might be to start fixing America by diverting some of the defense budget to sprucing up and repairing the nation, yielding results in a time frame of 25 to 50 years.

The story of another Churchill saying goes like this:

Churchill was walking in the garden of his beloved home, Chartwell, when he summoned the gardener and said, “I want you to plant an oak tree here.”

The gardener, looking to Churchill and seeing a man approaching 90, said, “But sir, it’ll take a hundred years to grow.”

“Well, you had better plant it now, hadn't you?” averred Churchill.

Quite so. The future awaits. – For the Hearst-New York Times Syndicate

CFS: One Disease and Its Costs

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What would happen to health care if a million new patients with just one of many now incurable and largely untreated diseases flooded the system, relying on medicine that could cost $70,000?

It might happen. Actually, it’s more than desirable that it should happen.

In one instance, a million or more patients who suffer from the devastating, life-robbing disease known as Chronic Fatigue Syndrome (CFS), or myalgic encephalomyelitis, struggle through days of almost total incapacitation, disorientation, pain and despair, clinging to hope that science will rescue them. All that’s known is that like AIDS, it’s a disease of the immune system.

The horror of this affliction is almost indescribable. I’ve been writing and broadcasting about these patients for several years and never have I seen such extended suffering, lives hollowed out, every tomorrow to be feared, the slightest departure from strict routines of inactivity to be met with punishing suffering.

The mother of an afflicted teenager told me that for New Year, her daughter went out for amid celebration. That exertion cost her two weeks in bed.

My friend and colleague (we host a YouTube channel, mecfsalert), Deborah Waroff, a New York-based writer, has been afflicted for 23 years and has seen her life confiscated. Like other patients she lives in a prison of her body with painful memories of when she was well. The body hurts, the memory tortures. Sleep does not refresh and long hours in bed do not heal.

Sufferers, held together in their pain by the Internet, trade sad notes. Going the rounds now is Winston Churchill’s statement in old age his life was finished but not ended. One sufferer e-mails me that she prays every night that she won’t wake up in the morning.

Patients groups say suicide rates are high. Determining the morbidity rate is a challenge because sufferers die from opportunistic infections rather than from CFS. In this, and other ways, it resembles AIDS and diabetes.

So far, the burden has been carried more by families and loved ones than by the health care industry. This is because there is no diagnosis per se for CFS, and no cure.

Dr. Andreas Kogelnik of the Open Medicine Institute in Mountain View, Calif., says there are no “markers” for the disease. There is nothing in the blood, marrow or soft tissue that identifies the disease.

Therefore, diagnosing the disease is by elimination – a time-consuming undertaking that the present medical regime is ill-equipped to provide. “You can’t do much in 10 minutes,” Kolgelnik says, referring to average amount of time allotted to patients by doctors.

So this is a disease that, even without a cure, the medical establishment has already indicated that it cannot afford.

The matter of affordability, for example, has affected diagnosis and treatment severely in the United Kingdom. There the National Health Service, always struggling with budgets, has encouraged doctors to teat CFS as a psychosomatic condition related to depression. The patients hate this and only recently has the British Medical Research Council softened its position.

That other medical nostrum, diet and exercise, is favored in the UK, too, but not by patients. They write to me constantly pointing out that exercise is corporal punishment for them; a recipe for relapse.

With only under-funded research scattered across the country at clinics and universities, the picture is bleak. But there are two pinpricks of light: a Norwegian cancer drug, Rituxan, which has helped patients in Norway and Germany, and a drug that is still in clinical trials in the United States, Ampligen, which rebalances the immune system.

Even those who administer the drugs, like Dr. Derek Enlander in New York and Kogelnik in California, don’t hail them as panaceas but as hopeful pacesetters. Neither is available except to a few patients in trials. And cost? Ampligen costs about $25,000 for a year of treatment, and Rituxan comes in at a whopping $70,000.

A slew of other diseases await expensive cures. In the future health-care costs, no matter what the Supreme Court and the politicians do, are going to go up and up. To the sick and their families, any price is a small one.

For the Hearst-New York Times Syndicate.

Universal Health Care — It’s Addictive

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Opponents of President Obama's health care legislation were wise to attack it preemptively in the courts on constitutional grounds.

If they hadn't attacked now, they would've learned that universal health care systems – sometimes a hybrid of public and private and sometimes single-payer national systems – are wildly popular in other countries.

So popular that politicians can do no more than fiddle at the edges, as they have done in Britain recently and are about to do in France. No leader, not even that incontrovertible defender of private enterprise, Margaret Thatcher, dared or even thought, to privatize health care.

In the industrial democracies, from Canada to Japan, people complain about their health care systems and would defend them to the death. Once universal health care is introduced and people are relieved of the fear of illness, leading to financial ruin, it is unrepealable.

The opponents of Obamacare must know this, or they wouldn't have been so anxious to test it in court on the grounds of the constitutionality of the individual mandate. Kill it before people love it was an imperative.

Now it's widely believed, after three days of hearings, in which conservative justices sounded more like they were conducting a congressional hearing than a judicial one, that Obamacare will be thrown out before it has ever been sampled by the public, which wouldn't come until 2014. It's been a bit like the Chinese and democracy: Don't let them try it, they might like it.

So how is it the Republicans have been able to so demonize Obamacare? Partly, it's because the administration has done an appalling job of selling its own program. It's almost as though it's ashamed of its offspring because it isn't the child they really wanted: a simpler bill with a public option and such goodies as interstate insurance sales.

The administration is frequently bad at trumpeting its achievements. As health care reform is its defining domestic issue, the fact that Obama and his cabinet have not extolled the virtues of the bill amounts to a curious dereliction, a sin of omission.

Most people have been persuaded, if they know anything about the bill at all, that it's socialized medicine (it is not); that it will double expenditures on health care (it won't); that it's an enormous new dictatorial intrusion into individual liberty (it's not).

It's not a great bill, but a good start.

We in the United States spend about twice as much as other countries on health care – about 18 percent of our gross domestic product.

Why? Everyone knows there's excessive testing and waste. The quick answer is to defend against lawsuits. Another answer is that doctors have no incentive to save money and through their investments in testing companies, often they have an incentive to order up the tests.

Mostly, I suspect it's just indifference; the medical equivalent of not turning the lights off.

I don't like Obamacare because it only does half the job and I'm uneasy about the individual mandate. Just two cheers from me.

The uninsured should be assigned an insurer and the premium collected through the tax system. That way the insurers would compete for the most desirable prospects, young adults, and a real pool would operate.

Another question that isn't asked: As new technology usually brings down costs, why does this not apply in health care? Why are CAT scans and MRIs not getting cheaper, as they would if they were in a different framework?

Why not use the Republican idea of health vouchers as an incentive to keep patients from frivolous use of services – not as the substitute for insurance, but rather as an incentive mechanism. Pay them to stay healthy.

We suffer from a failure of imagination in health care.

There are good reasons to be ambivalent about Obamacare, but it's a start, a building block. Our medicine is without peer, but our concepts of care are quite sickly. – For the Hearst-New York Times Syndicate